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Salon Says Your Disabling Pain is Imaginary

Salon recently decided to publish an article called “Big Pharma Says Your Mysterious Pain is Real.” It’s about fibromyalgia, and the growing acceptance among doctors that those who have it aren’t making the whole thing up. Seemingly, according to the writer, that’s a bad thing. And while the article makes a halfhearted attempt at portraying itself as an attack on Big Pharma, it really only takes a few sentences to realize, as already feared and expected, that it’s actually an attack on individuals living with fibromyalgia.

In the second paragraph, Robert Burton writes this, for example:

I can tolerate Pfizer’s endless ads for Lipitor, the cholesterol-lowering drug, because the ad is doing a public service. High cholesterol is a serious health problem. But watching the kindly middle-age actress interrupt the evening news to tell me that “my fibromyalgia is real” raises serious medical issues and underscores the ruthless drive of Big Pharma.

Because you know what’s not a serious health problem? Debilitating pain and fatigue that often can’t be alleviated with the help of pain medication. As someone who does not have that health condition, he should know. Also, how dare we tell the large scores of people, predominantly women, who have this very condition that they’re not just making it all up? After all, admitting that they’re not making it all up forces people like Robert Burton to feel a little less superior.

Then, we get this:

Let’s begin with a closer look at fibromyalgia itself. Despite strong convictions on all sides, nobody knows whether fibromyalgia is a primary medical condition, part of a larger constellation of other ill-defined conditions, such as chronic fatigue or irritable bowel syndrome, or a label given to a variety of physical complaints that arise out of various mental states, such as anxiety and depression. There haven’t been any reproducible and clear-cut objective findings, such as blood and lab tests, X-rays or anatomical abnormalities on biopsy, to provide a satisfactory understanding of the disease. Even the 1990 American College of Rheumatology diagnostic criteria — widespread muscle pain of more than three months, unassociated with other known illnesses, and the presence of at least 11 tender points over 18 muscle groups — are nothing more than subjective patient descriptions.

Wasn’t it really not so long ago that lots of people were convinced that both chronic fatigue and irritable bowel syndrome were all made up, too? In fact, I’m pretty sure that there are lots of people who think that people like me who have depression and anxiety are also just being a bunch of big fat whiners. But at some point, science apparently determined that people with all of these conditions weren’t outrageously delusional and didn’t deserve the scorn heaped on them. With fibromyalgia patients, however, we apparently just don’t have enough evidence to treat them like people.

For example, allowing patients to subjectively describe their symptoms? Whose zany idea was that? Of course, we can’t have the experiences of patients playing a role in their own care. Further, what could possibly be more vague than widespread muscle pain for more than three months, combined with the presence of at least 11 tender points over 18 muscle groups? Doesn’t pretty much everyone have those symptoms?

Oh, no, wait. They don’t.

Immediately after the hateful little diatribe quoted above, Burton then has the nerve to write this patronizing and disingenuous sentence:

By the way, I don’t mean to denigrate patients who experience pain associated with fibromyalgia.

Fuck. You.

Oh, I’m sorry, that might not be the height of intelligent and rational discourse. But it’s pretty much all I can muster to this kind of dismissive arrogance. Further, it’s a little bit difficult to want to engage someone in intelligent and rational discourse when they themselves have just spent a great deal of time cloaking their own bigotry, ableism and egotism in “reason.”

I don’t have fibromyalgia. So I can’t claim to even begin to understand what it is like. I have, however, had quite a few friends and family members who have the condition, two of whom I am/was very, very close with. And I have watched them live not only with physical pain that is frequently excruciating, but with the emotional pain of constantly being told that their pain is not real, and that they have no reason to be in pain, and that they really ought to just suck it up, fibromyalgia is totally fake, and why don’t they have a job, anyway?

And what is all of this for? Why, when it’s repeated in doctors offices and in conversation and internalized messages, does person after person find the need to write these types of articles reinforcing the idea of people living with fibromyalgia as fakers with imaginary pain? Just to find yet another reason to go after Big Pharma, regardless of the collateral damage, and the fact that the drug makers, generally evil though they may be, are providing treatments that people need? (In actuality, I think it also has a lot to do with the ableist desire of temporarily able-bodied people, who make up a significant majority of such writers, to express superiority over people with disabilities and appoint themselves as the real experts on their conditions.)

Ignore the fact that the condition existed decades before Big Pharma ever caught wind of it, which puts a kink in the whole “Big Pharma invented it out of thin air to pad their pockets” line.

Because if it comes from Big Pharma, it must be a lie. Make sure you keep your eyes covered so that you never see the lives of the actual people in question, who make have quite a different story to tell you.

The real kick in the teeth is that even with all of his posturing about how pharmaceutical companies are exploiting patients and creating drugs that don’t work for conditions that don’t exist, Burton himself has to admit that, oops, clinical trials did show that the drugs work, significantly better than a placebo, and resulted in a partial relief of symptoms. Of course, many fibromyalgia patients will tell you that’s nothing at all to sneeze at, but Burton has science! And totally “objective” opinions!

Fascinatingly, though, I think that he somehow manages to save the most patronizing rhetoric for the end of the article:

If a patient believes that there is something “wrong with my brain,” the effects can be disastrous. Anyone who has been told of a possible abnormality on a lab test knows how hard it is to shake off that disturbing knowledge even when repeat studies turn out to be normal. If a single lab test result can generate persistent anxiety despite contrary evidence, imagine the degree of negative expectation generated in those with fibromyalgia when they watch the woman in the Pfizer TV ad claim “my fibromyalgia is real.”

Interestingly, he doesn’t note even the remote possibility that — after years and years of asshats like Burton telling them that their pain may or may not exist, but since there isn’t scientific evidence meeting his personal satisfaction that it does, it’s better for everyone involved to assume that it doesn’t — those with fibromyalgia may feel, rather than acute anxiety, a profound sense of relief. There’s no consideration for the fact that people who have fibromyalgia happen to know damn well that their pain is real, and thus an acknowledgment can in fact be very meaningful and a nice break from messages to the contrary that they might find on any given day in the likes of Salon. One can only assume that it didn’t even occur to him.

I also want to take a look at the intersectional angle here a little bit. I mentioned earlier that a significant majority of people with fibromyalgia are women. And anyone who’s done even the most basic research on the condition knows that to be true.

So what we have here is not only a man telling people that their lived experiences are invalid, because he thinks that some test results aren’t quite clear enough. We have a man telling women that their life experiences are not valid. We have a man telling women that their feelings don’t count, and that they’re overreacting. We have a man telling women that what’s they’re going through isn’t worth dealing with because it’s all in their heads. We have a man telling women that he’s the truly objective one, and they can’t possibly be rational in their understanding of what is going on with their own bodies.

We have a man telling women, essentially, that they’re being hysterical.

[NOTE: Comments which are dismissive towards the experiences of people with disabilities, including people with invisible disabilities, will be deleted. They also just might get you banned. This absolutely, 100% includes those comments which argue that fibromyalgia is not real.]

109 comments for “Salon Says Your Disabling Pain is Imaginary”

great analysis of an awful article. i was especially reminded of similar discussions of mental health issues, which depend on subjective recounting of symptoms by patients, cannot be confirmed by blood tests or medical imaging, and are also seen as an area where big pharma is taking advantage of people. the other similarity is, of course, that women receive treatment for mental health issues (and especially the “less severe/obvious” conditions like bipolar and depression, rather than schizophrenia) at disproportionately higher rates than men, and that symptoms of those disorders can also easily be classified as “hysteria.”

while i definitely believe that big pharma has some serious issues, the tactic of dismissing people’s subjective accounts of mental or physical pain because they’re hysterical women is not an argument against big pharma. it’s an argument against the humanity of anyone making that argument.

Arkady

June 17, 2009 at 5:52 pm

One of the things that annoys me when people say something is ‘all in the mind’ without thinking through just what a complex thing the ‘mind’ is. So what if the pain of fibromyalgia has no ‘physical cause’ in the sense that there’s no actual damage to the muscle, ‘pain’ is a set of signals interpreted by the brain, and even someone with only a basic understanding of neurobiology would get the concept that a few ‘crossed wires’ of some sort could put someone in just as much agony.

(have not personally known anyone with diagnosed fibromyalgia, but my sister has had ongoing undiagnosable gastric problems for several months, and nothing physically wrong on any test, except for a slightly enlarged gallbladder that they removed to no effect. She didn’t get much of an effect with opiate painkillers, but is now on tricyclic antidepressants that supposedly have a weird side-effect on other neural pathways and she’s making a slow but steady recovery. And she got very pissed off by doctors telling her she was ‘making it up’)

I have never understood people who just don’t want to believe what other people are telling them, about any aspect of their experience. (Racists do this a lot too; “I am never mean to (fill in group) therefore, they are making it up that they experience hostility from my group.”

I have noticed, though, that ONE reason people are dismissive about other people’s illnesses, is that they don’t want to have to go to the effort of feeling or being compassionate. In other words, the compassion-lacking individual is LAZY. Hmm. Lazy. The very thing they are calling the ill person!! Could it be….PROJECTION?!?!?!

Plus, they want the ill person to be WELL, and they WON’T!! They refuse to just FEEL WELL, and the un-compassionate person feels all frustrated. WAH!!!

thank you, cara, for posting this. although i don’t have fibromyalgia, i do have a number of hidden disabilities, including chronic pain (complex regional pain syndrome), anxiety, and depression. i am sick to death of being told to “just buck up”, “can’t you just work through the pain”, assumptions that i am lazy or immoral because there are days where i. just. cannot. get. out. of. bed. not to mention doctors at a *pain center* treating me in the most patronizing manner possible and assuming that i’m malingering.

(and for those of us who are trans, there’s the added joy of doctors telling us that stopping “artificial hormones” will cure everything, or requiring the patient to stop hormones before the dr will treat us.)

robert burton can go fuck himself. he is an ignorant ass – despite the variety of diagnostic tests and equipment, medicine still relies on the patient’s subjective experience to diagnose and treat disease. burton would not be bloviating about “tenderness in 11 out of 18 points” if fibro were a disease affecting mainly men.

(i’d say “cue elaine vignault urging us to just throw our meds away and get rid of our ‘negative attitudes’ in 3…2…1”, but since this thread will be strictly moderated, i won’t :o)

Full disclosure: I have fibro, and it sucks. For me, dealing with peoples’ stupidity when it comes to invisible disability is so, so much worse than the pain itself.

Weirdly, Burton seems to be saying two different things: That the fMRI tests *do* prove that fibro is real, but that Big Pharma is making a huge deal out of it and is trying to make money, so people shouldn’t “expect” pain because then they will have pain and want to be medicated, or something. I don’t even know. The “negative expectation” bit just seems to me to be an excuse to tell people that they’re not thinking the right way or some shit. Only a person who has no experience of chronic illness, pain or disability could say such a thing and say it seriously.

Awesome takedown of exactly what is wrong with this article, Cara!

shah8

June 17, 2009 at 6:22 pm

Don’t take this the wrong way, but pain is fascinating subject. Not only in how pain is caused and how people feel pain, but also in how others respond to assist or cause pain. Diseases and drugs that tend to affect people’s ability to feel pain sometimes are the most interesting, given how complex the neurology of pain is.

Dismissing pain is one of the classic mechanisms of heirarchal stuff-downs. I manfully stand my pain, while you’re wimping out on me…you’re so weak! And it’d be that I had a hanging fingernail and you’d have a sprained ankle. Invisible pain feeds class and power dynamics.

Robert Burton is an asshat though, in more ways than one. Big Pharma’s problem isn’t that they make up miracle cures for fake illnesses. Big Pharma’s central malignance to health care today is that they have no real concern for appropriate dispensing of their drugs. Creating a new drug is too hard and too expensive for *any* imaginary illnesses to get megabucks.

When I was in college, I started to have a wide range of symptoms that affected my schoolwork. These included intense headaches, aching joints and muscles (my hips were the worst) and constant fatigue. We suspected Fibromyalgia, or possibly Chronic Fatigue Syndrome. I went to a few different specialists, including one for Rheumatoid Arthritis who told me very bluntly that she did not believe in Fibromyalgia. Well it definitely wasn’t RA!

I got head MRIs. Endless blood tests. I even had an initial test for Lupus come back positive, but subsequent tests were negative.

I tried a lot of different things to help my symptoms, including anti-depressants, and physical therapy. The only thing that gave me pain relief at the time (and still helps immensely) was Reiki/energy massage.

We never found a name to give to what I was experiencing, and it still affects me today. I go through phases where I am constantly exhausted. I have been diagnosed with PCOS and Vitamin D Deficiency in the past few years, but none of the treatments for those conditions have helped the underlying issues.

My aunt has been diagnosed with Fibro and I am so happy to see that there are medications available/being developed. I hate the lingering attitude that people who suffer on a daily basis are making it up. How arrogant.

Thank you for this article.

Ruchama

June 17, 2009 at 6:34 pm

Great analysis, Cara.

I have possible fibromyalgia — I’ve got the 11 pressure points, but I also have Ehlers Danlos Syndrome, and the doctors can’t seem to agree on whether or not that particular pain is a result of the EDS or fibromyalgia separate from it. At any rate, those pressure points are something really specific, and really obvious — when I get tested for those, the doctor presses on a bunch of points on my back and legs and arms, and sometimes, she’s not right on the right muscle the first time. So, she’ll press on one point on my back and it just feels like light pressure, then she moves over an inch and presses again and I nearly jump out of my skin from the pain.

I made the mistake of reading the whole article, and then compounded it by reading some of the comments.

ARRRGGGGGHHHHHH!!!!

These people make me crazy! I’ve had fibromyalgia since I was 10 years old (37 years now). I can tell you right now that I had no one making suggestions that might have encouraged me to believe I was in pain.

I’ve spent 37 years being accused of being a hypochondriac by doctors and relatives alike, and I’m sick the hell of it. Like I could somehow think myself well.

I’ve got news for the asshole who wrote that article. I’ve been on antidepressants, and I’ve had cognitive behavioral therapy, thank you very much, and while it helped my ability to cope with my disease, it didn’t cure it. It seems to me that if drugs that change the chemical makeups of our brains help our condition, then just maybe there *is* something wrong with our brains.

He also needs to do some research before he writes an article. Pfizer didn’t pull Lyrica out of their asses. It’s a different version of the drug Neurontin, that has been around for ages. Doctors noticed over 10 years ago that when Fibromyalgics were treated for Restless Leg Syndrome with Neurontin, their fibromyalgia symptoms also improved. There was no suggestion there that the Neurontin would improve their pain, just that it would improve the RLS. And yet their FMS pain did, indeed, improve. Pfizer just came up with a newer, better version of Neurontin.

He also fails to mention that FMS isn’t the only chronic pain condition Lyrica has been approved to treat. I don’t think anyone would suggest that diabetic neuropathy is caused by the patient’s belief that their pain is there. And yet Lyrica has been quite effective in treating the pain of diabetic neuropathy. So why does he think it’s an effective drug for one pain condition, but only a placebo effect in another pain condition.

The author has the same affliction as many doctors of his generation. If the test results are negative, then there is obviously nothing wrong with you. They overlook the fact that many diagnoses that are well accepted today at one time had no test to diagnose them and were doubted by many doctors. MS immediately comes to mind. It has clear diagnostic criteria now, but in the 70s and 80s, many doctors argued whether the illness really existed or was only a figment of the patient’s imagination. You’d think they’d learn their lesson from that one, but obviously, they haven’t.

I’m not a violent person, but I’d be sorely tempted if I met up with that guy face to face.

Chryslin

June 17, 2009 at 6:52 pm

Thank you for a wonderful smack down. I have fibromyalgia periodically and the pain in indescribable. Especially when you can wake up every morning with a completely new set of points screaming in pain from the ones that were doing it yesterday. I’ve been told too many times that it wasn’t real, until a shrink put me on a cocktail of mood stabilizers/antidepressants that made me gain 50 lbs. But it did relieve the pain and it’s a testimony to how bad it was that I was willing to accept the trade off gladly – even in our culture. Today, as long as I take care of myself and my anxiety/depression/stress, it seems to stay away. I don’t know why and I don’t care — as long as it doesn’t come back.

susan

June 17, 2009 at 6:53 pm

may I just point out that 20 years ago male impotence was thought to be wholly “supratentorial” in nature (all in the mind). Dr. Burton doesn’t seem to mind that the other 50% of dinner hour commercials are for its *real* blockbuster drug, Viagra.

(In actuality, I think it also has a lot to do with the ableist desire of temporarily able-bodied people, who make up a significant majority of such writers, to express superiority over people with disabilities and appoint themselves as the real experts on their conditions.)

All day, every day.

Great post.

Esme

June 17, 2009 at 7:31 pm

I had never actually heard of fibromyalgia until a few years ago, when the mother of a loved one explained what it was to me. She also explained that she’s spent years being told that there was nothing wrong with her, until eventually she went to a doctor who actually listened to her, and explained what the condition is, and diagnosed her.

I don’t have personal experience of the disease, but I do have depression and bipolar disorder. And I know that I spent 8 years never getting a night’s rest, cutting myself apart, and wanting to die, and thinking that that was NORMAL, because everyone I ever talked to about it told me to just suck it up, repeated the same suggestions for herbal remedies, or told me to exercise more. And I am still told, now that my medications are properly balanced and I am stable and holding down two jobs, by family members no less, that my depression isn’t real, that I just need to work harder, exercise more, eat better, and suck it up.

I know precisely where this fellow can stick his “you’re just brainwashed by the pharmaceutical companies” schtick. And it isn’t on a major blog.

A knowledge of the history of the drug is very helpful to understanding the reactions to the Lyrica commercials now that they have come out. Like Maritzia says, it’s actually a superpotent form of Neurontin, developed to make up for the fact that Neurontin had fallen into the generic market (companies regularly do this: they get the exclusive manu rights for so many years, then generic manufacturers get to have a go at it, so they reformulate the drug slightly differently to maintain those exclusive rights). They were testing it for a variety of coniditions, including diabetic neuropathy and generalized anxiety disorder.

The FDA approved it for the former and rejected the latter application, saying it wasn’t effective enough — but it was approxed for GAD in Europe, a fact which the author tries to use as evidence that fibromyalgia must therefore be made-up in-your-head nonsense. That doesn’t even make *sense* if you understand how fibromyalgia works: there are a variety of things going on in the body that all combine to amplify sensations of pain, interpret non-painful sensations as painful, and screw with the nervous system in general. Some of the chemical imbalances are shared with depression and anxiety disorders. So … one shared mechanism totally erases all the other way fibromyalgia works *differently* from depression/anxiety? I thought he was supposed to be a Reasonable, Logical Man…

Like I said, fibromyalgia was around for decades before Big Pharma ever decided it was a good market to exploit. And you know what? The very fact that Big Pharma started paying attention to it has been a benefit to fibromyalgia patients as a whole, because all of a sudden a lot more money is being poured into researching what it is and how it works. (Rather than just assuming it’s a new word for hysteria/hypochondria and calling it a day.) Surprise surprise, they started doing research and started to find ways that fibro patients differ from healthy controls, and differ from depression patients, and differ from its sister syndrome CFS (thought to be the same thing for years, then — surprise! — someone did more research and found evidence it is a very distinct condition w/ very different causes) and so forth. They started to learn more about how the body of a fibro patient actually works. This is around when we figured out it wasn’t an arthritic condition (but doctors still vainly prescribe NSAIDs to fibro patients, despite that they do nothing unless you also have a comorbid inflammatory condition) but a neurological one, and the theory of central sensitization (that is, the central nervous system is over-sensitized) was developed.

This is why a pill like Lyrica works, actually: it depresses the central nervous system, which is over-sensitized. Take an over-sensitized CNS, depress it, get a slightly-closer-to-normally-sensitized CNS! Magic!

The other tidbit to know: Lyrica can’t be abused. I mean, I guess someone could take it in a non-prescribed fashion, but it doesn’t actually do anything for patients who don’t have neurological pain. It doesn’t provide any sort of high (or low, or anything else). You might get a few of the side effects if you take it more than once, like blurry vision and weight gain. But, again, unless you have a condition which causes neurological pain, Lyrica ain’t gonna do nothin’ for ya.

Take that for what it’s worth.

EntoGeek

June 17, 2009 at 7:49 pm

What an asshat. My mother has fibromyalgia. She figured this out for herself a few years ago with her new doctor after believing since she was diagnosed at 19 that she had rheumatoid arthritis. I dont like Big Pharma either, but this is stupid. My mom usually doesn’t take a lot of pain medication because it puts her to sleep, but it is absolutly necessary to keep her from excruciating pain on her bad days.

btw, no one gets diagnosed with fibromyalgia via a fucking brain scan. They see an average of four physicians before they’re ever diagnosed. Most doctors regard it as a diagnosis of exclusion, so if there’s anything else that might be causing the pain, they won’t diagnose it. So maybe you’d get a brain scan for that, if they think it relevant, I guess. But the method of diagnosing FM is quite clear.

Also, it’s a syndrome. That means it’s basically just a collection of symptoms people share in common. That’s it. Saying “fibromyalgia just seems to be a collection of symptoms, and blood tests don’t show anything, well then it can’t be a real disease!” is just stupid. The word “syndrome” exists in the medical lexicon, existed well before fibromyalgia came up in anyone’s head, and means something significant on its own. It’s like saying “evolution is just a theory!” NO YOU DUMBASS READ A FUCKING BOOK OR SOMETHING ARGH

Michael

June 17, 2009 at 7:55 pm

I have mental health problems (bipolar). If any corporation wants to make profit by offering new medications for it, I hope they do, and I will not object to them making millions of dollars from it. Everyone loves to hate pharmaceutical companies, though with never providing an alternative other than they should do it for free.
Also, many illnesses are not able to be identified clearly by tests. This does not mean they are not real, and yes, doctors should treat these patients based on self diagnosis.

kim

June 17, 2009 at 7:59 pm

thankyouthankyouthankyou

My mother was only recently diagnosed with Crohn’s disease, after suffering the symptoms of it for over 10 years and being told that those symptoms were due to menopause. It was only after she had 1/3 of her intestines removed that a patriarchal medical establishment stopped blaming her symptoms on being a hysterical woman and started taking her pain seriously.No one should have their pain dismissed. And the shocking frequency at which women with Fibro experience this is dismaying, to say the least.

Also, I was expecting this, to some extent, when Lyrica was finally approved for FM. It was a very, very big deal to finally have something, anything, FDA approved specifically for treating FM. It meant the condition was legitimized. And it meant attention. More attention, from other pharm companies wanting their me-toos, but also attention from other corners of the industry who might not’ve noticed before.

But when the commercials came out. Man. I was not expecting the intensity of the bile to come from ostensibly-progressive sources. I expected the usual sources to complain, but it’s like it gave everybody else an excuse to burst in with their own ill-considered bigotry.

This is what comes with progress, I suppose. We finally get a few promising treatments (Lyrica is not the only one, and others are in development stages) instead of tricyclics (which don’t help pain so much as make you not care about the pain, which is not a good state to be in 24/7) and narcotics (obvious problems, even as a defender of narcotic use for chronic pain, it is still verrrry risky territory) and NSAIDS (don’t work at all on neurological pain period). And a bunch of people studying fibro such that our understanding of it is much deeper and doctors have a finer understanding of how to handle their patients and their problems with sex or exercise or comorbid conditions…

But with it we get these assholes. And we get more attention from them and their ilk. And there were always assholes, but now it’s become a popular thing to be assholeish about and other people think that’s just cute and dandy and become assholes about it themselves, and now I have MORE assholes to deal with, oh lovely.

So we get to choose between abject invisibility, or scrutiny, hatred, hostility and ridicule.
Now a lot more people who might’ve thought “oh, hm” in reaction to being made aware of our illness, and not known how to react so didn’t react at all — now they’re being given the cheat sheet on how to react.

I’m just loving it. And I really hope the over/under on the whole more-people-understand-the-truth-than-believe-bigoted-lies tipping point is, like five years, and not fifty. Because given the track record, we could be in for a very long bumpy ride.

BadKitty

June 17, 2009 at 8:59 pm

Dear Salon: BITE ME.

I have fibro and it’s a continuous battle not to get down on myself for not being able to “will myself better” when I have a flare up, thanks to idiotic articles like this.

I do have an interesting experience to share with people who are dealing with fibro. My oncologist* has a theory that fibro is caused by/made worse by Vitamin D deficiencies. He ran a blood test and sure enough, my Vitamin D levels were dangerously low. He put me on over the counter supplements and sent me out into the sunshine for 15 minutes/day. 2 years later, my D levels are normal and I rarely have fibro symptoms. When I do, it’s usually because I’m premenstrual or haven’t been taking care of myself. I told this story to a friend of mine who sent her daughter in for testing and she was also diagnosed as severely deficient in Vitamin D. Her pain has significantly improved.

Please note that this is my experience, not medical advice. I don’t know of any formal studies on this topic and would not tell anyone to take anything without talking to their doctors. However, if a bit of sunshine and some OTC Vitamin D supplements can help with fibro pain, I’ll take that over Rx medications any day. Much safer and cheaper.

*I was seeing the oncologist for breast cancer, not fibro. He was focused on the link between low Vitamin D levels and cancer but he had seen improvements in other patients who also had fibro when their D levels normalized.

William

June 17, 2009 at 8:59 pm

So we get to choose between abject invisibility, or scrutiny, hatred, hostility and ridicule.

Isn’t that always the choice the the disabled, the mad, and the ill get to make? Sit down, shut the fuck up, and don’t bother the healthy people or stand up and volunteer to have anything that isn’t nailed to the floor thrown at you?

Burton’s article is pretty simple to sum up: FM is scary and I don’t like the idea of the world not being predictable and safe so all you people who say you have it must be lying for the attention. Its the same projective ressentiment, packaged in the same faux concern, that Szasz has been shilling for close to half a century.

BadKitty

June 17, 2009 at 9:08 pm

Full disclosure: I am also on Effexor and a tricylic but was still dealing with fibro pain on a regular basis until my Vitamin D levels came up. I don’t want to make it sound like Vitamin D is a miracle cure.

Victoria

June 17, 2009 at 9:36 pm

Thank you so much for this.

I am eighteen and was diagnosed with FM when I was fourteen years old. My aunt, grandmother, and great-grandmother all have been diagnosed but I saw at least four doctors before one finally acknowledged that my pain was real.

I particularly appreciated when you said – “it’s better for everyone involved to assume that it doesn’t — those with fibromyalgia may feel, rather than acute anxiety, a profound sense of relief.”

That is SO TRUE for me. I had been running for most of my life and had always experienced pain, but back then I was told to toughen up and work through it, so I did. It was my first cross country season in grade nine that really caused me to start seeking medical opinions because once the beginning of the season soreness that everyone experienced was through, I was still in intense pain and had a difficult time running. I felt socially alienated on the team because at some points I couldn’t keep the physical pain I was experiencing from manifesting itself in words. I tried hard not to complain, but it was just too extreme.

Being diagnosed with FM was a huge turning point for me because from then on I knew what made me differently-abled. I had a word to use, symptoms to explain. And I found out that I was not alone, that people in my own family were experiencing this too. It hurts so much to read that article and to witness the occurring internalization that this pain is not medically or physically real and that we should just get over it. Fuck him, he need to get over the fact that this is REAL.

I have fibro, although depending on which of my lovely military doctors you ask I don’t because if they wrote it on paper they would actually have had to give me disability from the military. I can not tell you how having your diagnosis yanked around like that fucks with your well being…

This guy can bite me.

Thank you, Cara. Thank you so much, for not only addressing and taking this shit down, but for also showing that disability and the way we treat the Other Abled is a feminist issue. I am sick to death of defending that position in feminist spaces. You rock.

BadKitty: I have also found some relief in “non science” methods of treatment, such as with vitamins, supplements, tinctures and the like. I don’t pretend things work for anyone but me, but I know my body, my experiences and how it feels. It has also helped when my doctors were just A-Holes and weren’t giving me any choice but to try something on my own. Good to know I am not alone.

Karrin Jackson

June 17, 2009 at 11:48 pm

As someone living with fibromyalgia, when faced with articles and attitudes like these, I find myself at odds between the desire to be a peaceful sort and the urge to take a tire iron to the denier, yelling as I work them over, “IT’S OKAY! IT’S NOT REAL!”

But then I realize it’s not worth the pain I’ll be in later, plus there’s probably some other downside I’m not seeing.

I wish it wasn’t real. I had to get diagnosed four different times by four different doctors before I would even accept that it was real. Words can’t describe the seething, violent rage I feel when some self-styled Dr. Internet tells me I’m making it up. Walk a mile in my shoes, then come back here so I can kick your stupid ass.

Dymphna

June 17, 2009 at 11:50 pm

I saw that article and avoided it because I knew it would piss me off. Grr.

“Your illness is all in your head! Not that that’s a bad thing or anything …”

sorta like

“I’m not gay! Not that that’s a bad thing or anything …”

First off, all in your head is the same as in your body because your head is in your fucking body. Second, illnesses that occur “in your head” are still illnesses. You do not have to locate them elsewhere in the body to legitimize them. Third, just about everyone in the medical field who is paying attention recognizes that most illnesses have a somatic and a psychological component. If we could get over our feelings of shame about psychological problems, on the one hand, and stop hucksters from going the other way around and trying to sell us books about how it’s all about fucking willpower, we’d maybe be able to adequately treat the whole person.

Also, hooray for Neurontin. I had crippling migraines at least every other week until I wound up on Neurontin (prescribed for anxiety) and discovered that the migraines stopped. This does not mean that I fucking imagined my migraines.

/rant

viewsaskew

June 18, 2009 at 12:16 am

I couldn’t help but be reminded of the eerie similarity of this article about big pharma and fibro and the dozens of articles about big pharma and RLS. It’s quite amazing that people only see what they want to see. Over 500 years ago people were writing about the horrors of RLS. But in 2003 and beyond, people are claiming big pharma made it up to sell drugs. Tell that to my grandmother who spent 50 years sleeping no more than 3 to 4 hours a night!

I don’t have fibro, but I think each of us can help when we see articles like this, whether a blog, a newspaper article, a commentary somewhere, or the ridiculous video expose that Consumer Reports did about RLS. We can write an excellent piece such as Cara did above, we can post our thoughts at the blog, we can write the editors. When people say things like this, it hurts all of us. Everyone of us may eventually have one of these disorders or know someone who does. By standing up and stating the facts, we can potentially help the person see the error in their logic. While that may be a bit far fetched, hopefully we can reach others who wouldn’t know that the writer might be seeing it a bit one-sided.

Thank you for taking your turn, Cara. I’ll continue to take my turn whenever I can. And, I hope that everyone else who reads this will take their turn, too.

Maritzia – interestingly enough, my Dad was one of the first neurologists to specialize in MS, and is a long-acknowledged expert in MS diagnosis, since long before they had clear diagnostic criteria. He has repeatedly astounded colleagues by coming up with proper diagnoses for patients with long-standing, mysterious conditions.

His secret? He sits down with the patient (a new patient consult with him takes several hours) and talks to them. He then believes what they tell him unless he has a clear prevailing reason not to. He weights the patients’ self-report of symptoms as least as heavily as his test results.

Somehow, despite a lengthy, highly successful career in neurological diagnostics, his methods never seem to catch on. It’s just so much easier to take a few tests and never talk to the patient at all. After all, if the tests come back normal, nothing must be wrong with them, right?

widespread muscle pain of more than three months, unassociated with other known illnesses, and the presence of at least 11 tender points over 18 muscle groups

He makes it sound like it’s comparable to having some sore spots the day after exercising hard or something. After watching a friend of mine go through months and months of agony before she was diagnosed with fibro, I’m going to bet that this Robert Burton fellow has never experienced pain like that in his life, because he apparently literally can’t even imagine it.

Like you said, it “has a lot to do with the ableist desire of temporarily able-bodied people…to express superiority over people with disabilities and appoint themselves as the real experts on their conditions.” I think that assertion of “superiority” also has to do with wanting to feel like disabilities could never happen to able-bodied people. The idea of being in constant pain is understandably terrifying, so this guy has to tell himself that he could never have to undergo anything like that because he would be able to soldier through it and not let his mind fake him out or whatever.

And, yes, I understand the wariness of Big Pharma, but look. It is beneficial for society to have as many effective medications for as many health problems as possible. It’s not like you can just say, “Okay, well we got rid of the big stuff like polio, everything else is too small to worry about, but those greedy pharmaceutical companies keep trying to cure it anyway!”

karak

June 18, 2009 at 1:40 am

For the longest time, my impression of fibromyalgia was that it was a throw-away diagnosis. “We can’t find out what’s wrong and you won’t stop bitching, so here’s a diagnosis so I can go home.” (My impression has since changed. A lot.)

As more and more people speak out about it, however, it is clear that SOMETHING is wrong with these people. They HURT. And for all Mr. Fancy-Pants wants to demand science, I give him this: Science can actually detect the presence of pain in the brain and nervous system. The intensity of pain is subjective, but the existence of pain, as phsyiological arousal, is undisputed. Pain is real. Relief from pain is also real. And whatever is causing the pain is also real.

I’ll give you something about the whole “but it doesn’t appear on any medical test!”, meaning that you can’t measure it with X-rays and bloodtests.

My mother is a pediatrician with 35 years of experience and she says that her patients are often undernourished because of her parent’s misguided attempts to avoid obesity. Children and teens with a diet problem normally have perfect blood tests results. She diagnoses undernourishment by the condition of the skin: if it feels papery, the child needs more food. If it feels nice, the child is naturally thin.

Combine that with the changes seen on brain scans such as dopamine SPECT scans and the people really in the know, top level neuroscientists and researchers, have gone from even thinking about whether Fibro is real to thinking about whether it’s a disease (with visible damage – neurodegeneration) instead of a syndrome.

Parkinsons Disease was used to be thought to be made up, along with many conditions that are now widely accepted. Just because medical science had to advance to get “proof” of these conditions, as with Fibro, in no way affects their legitimacy.

Robert Burton is sadly out-of-date. A Luddite in an era where medical imaging and the study of Fibro are opening up new areas of knowledge into how the brain works.

The processes behind Fibro are rapidly becoming understood and that is paving the way for treatments like Lyrica to be used even more effectively.

I wonder if Mr Burton would volunteer for an experiment that can temporarily induce Fibro symptoms? See then if he thinks a medication that helps would be a good idea!

I wonder too if he even realises that not only do men get Fibro too (and it is likely under-diagnosed in men), but any man could be at risk of getting it. Athletes develop Fibro, soldiers develop Fibro. I hope – for his sake – that Mr Burton is not heading towards developing Fibro himself. Has he ever considered if he has risk factors for developing the condition?

Full disclosure: I have Fibro, have done for 7 years. I run a UK charity, FibroAction, that is raising awareness of Fibro and especially of how much is known about Fibro and how much can be done for it. I recently attended a Pfizer sponsored lecture at the Cheltenham Science Festival, in order to hear Prof Irene Tracey, head of the Oxford fMRI Centre speak about pain.

I’m surprised at how many people think that those who have a chronic, perhaps ill-defined, condition and also take some form of anti-depressant/mood-stabilizer must be making up their pain-related symptoms and/or it’s all in their head.

Because heaven knows being in pain long-term would never affect anyone’s mood!

Or that being constantly told that you’re lying could affect your mental health!

Or that being treated like a subhuman by others could make you depressed and self-loathing.

Gosh! What a shock, that people with chronic pain conditions could also be on anti-depressants!

Dr. Burton doesn’t seem to mind that the other 50% of dinner hour commercials are for its *real* blockbuster drug, Viagra.

Silly Susan! Serious medicine is for menz, everyone knows that.

Ledasmom

June 18, 2009 at 6:51 am

So believing that something is wrong with your brain can be disastrous? You know what else is disastrous? Having something wrong with your brain.
I am now being intensely thankful that, despite his otherwise aggravating qualities, my doctor does actually listen to me when I tell him my brain isn’t working right.

umami

June 18, 2009 at 7:19 am

Does he have one good point buried somewhere in among all the BS? His article seemed very muddled in whatever points it was trying to make, but I got the impression that he was trying to say something quite important about how an illness that is in the mind is still “real.” I felt even his own article was, as Cara points out, undermining the argument he was trying to make about it being in the mind, never mind the stuff people have said here, so whatever. And obviously it’s important to know the real cause of an illness for it to be treated properly, and the extent to which women are not treated properly because they are assumed to have, say, anxiety symptoms instead of actual heart problems is shocking.

It’s just sometimes I catch a whiff, in people insisting that chronic fatigue and fibro or whatever are not mental illnesses, of the idea that the disease would be less “real” if it was a mental illness. And even of a moral superiority of people who are physically ill over people who are mentally ill. And I got the impression he was partially arguing against that mindset. Wasn’t he? His article was all over the place so I might have misunderstood what he was trying to say in that part.

But yeah, I hate people who dismiss other people’s illnesses. I’ve even seen ignorant fools claiming that peanut allergies are made up by hysterical coddling mothers! Never mind that peanut allergies kill people.

Vail

June 18, 2009 at 7:27 am

@Megan I too have PCOS and have had hip pain and headaches. The hip pain has gone away somewhat now that I’m not in retail anymore (that was a nightmare) but I still get horrible headaches that aren’t (I’m told) migraines. Maybe it’s’ something caused by the PCOS that they haven’t figured out yet. BTW I went to a doctor for years trying to have a baby, and they never diagnosed PCOS, I ended up diagnosing myself then having my GP run the tests. I had watched that show “Mystery Diagnoses” and there was a woman who had all of my symptoms.

Umami — yes, he tosses out the idea more than once that we should get outside of the framework of “real” and “imaginary.” Depending on where he went with it, it might be a viewpoint at least considering.

But he didn’t seem to be arguing that if fibro is caused by the brain rather than the actual muscles experiencing the pain, that would be no less “real.” In fact, he seems to say “we need to not talk about whether or not pain is real or fake” and then follows it up with “but you know fibro pain? FAKITY FAKE FAKE FAKERS!!!!”

How else do you explain his admonishment of the phrase “my pain is real”? Do you really believe he’s upset by it because of a philosophical quandary? Particularly, do you believe it when he starts off his article by contrasting fibro against a “serious medical condition” and assuming we all agree that fibro isn’t one?

Lastly, how do you get the idea that he’s arguing that fibro is a mental illness, which we should take just as seriously as if it were a physical illness, when he’s also essentially arguing that it’s something you can control by positive thinking. (i.e. if only you don’t think you’re going to be in pain, you’ll be in less pain!) Mental illness doesn’t work like that. And if that actually was his argument? Well, I assure you I’d have quite a few strong words for him in that regard, too.

After reading the original article and the comments here, I’d like to suggest a middle way that recognizes the reality of fibromyalgia and is also critical of the motives of Pfizer and large pharmaceutical companies. Neurontin (Gabapentin) was one of Pfizer’s best selling drugs, used to treat a variety of conditions including chronic pain. However, a generic version was approved by FDA in 2004. This cut into Pfizer’s profits — why pay more for the brand name when there is an identical generic product? So, Pfizer had to find a new way to repackage and market Gabapentin. This is just one example of the common practice by pharmaceutical companies once a patent expires or a generic product becomes available. Many of so-called new pharmaceuticals are really just “me too” products that don’t differ substantially from ones that have gone off-patent.

umami

June 18, 2009 at 8:10 am

Cara, that’s why I found the article very confusing and all over the place, because those contradictions definitely exist in it. I’m not trying to defend him. But I do think that one point that he seems to have been trying to make is a good one.
In his case though he seems to have been most likely making it in bad faith as a cover for his ableism and misogyny.

I think the point about the thought processes might have been that although you can’t control a mental illness by positive thinking, you can worsen it by negative thinking? And all kinds of illnesses are affected by placebos and the like. So hearing my “pain is real” might, from his perspective, worsen it. I think that’s really unlikely because most fibro patients would be, as you said, immensely relieved to hear that. But I can see how someone with no actual empathy would believe the other thing. Absolutely not defending his position there, just trying to parse out what he might have meant.

Either he’s a really terrible writer, or he’s being deliberately confusing and contradictory to make it less obvious what a douchebag he is.

@Ruchama: you might want to talk to Rah. I don’t know if you know anyone else with EDS, but Rah a) does have it, and may have comments and/or suggestions and b) is awesome.

@Salon: FUCK YOU.

I have chronic Lyme disease. I was diagnosed with fibromyalgia. Luckily, I don’t have it, but I am on Lyrica. Guess what? It helps relieve some of my nerve pain. It isn’t just a placebo or a creation of Big Pharma to make some money; it helps relieve the pain. This isn’t fucking rocket science.

Lastly, how do you get the idea that he’s arguing that fibro is a mental illness, which we should take just as seriously as if it were a physical illness,

Interestingly, my psych professor this semester expressed his regret that people even still use the phrase “mental illness,” as, since the mind = the brain which is part of the body, the more appropriate term would certainly be “physical illness with psychological symptoms”; in his view (with which I am inclined to agree), “mental illness” is a misnomer which leads too easily to the confusion that you can somehow think your way out of it, which is indeed as false as the idea that you can think your way out of cancer.

(which reminds me of another pop-medicine pet peeve – the whole “people who have positive outlooks recover from cancer more.” it’s a lot easier to have a positive outlook if your cancer is GONE than if your cancer is NOT gone, and people are HUGELY prone to retroactively projecting their current state of mind onto the past when asked to recall past events. even more faulty reasoning is on display in this article – yes, shockingly, people who have increased sensitivity to pain might believe themselves to have increased sensitivity to pain. um wat.)

this was a great post, Cara. thanks.

kaninchen

June 18, 2009 at 8:50 am

I have fibromyalgia. Today it’s completely fucked my brain so I don’t have much to say. Fortunately y’all said about everything I might have.

“It’s just sometimes I catch a whiff, in people insisting that chronic fatigue and fibro or whatever are not mental illnesses, of the idea that the disease would be less “real” if it was a mental illness. “

I think to really get a handle on chronic fatigue syndrome and the “it’s real, ‘in our heads'” conversation, it’s important to have a good idea of the history of how people with chronic fatigue syndrome have been treated and the ways in which chronic fatigue syndrome has been constructed in medical dialogue. This isn’t past history, it continues right through to today. To get a sense of this, you need to read some Wesseley.

Simon Wesseley is a psychiatrist whose faulty beliefs about chronic fatigue syndrome have been extremely influential in the UK and beyond. He has been regularly published in the British Medical Journal, and referenced all over the place. He believes not that chronic fatigue syndrome is an atypical version of a known mental illness (a problem elsewhere within the medical system, not because it’s stigmatised, but because it leads to misdiagnosis and incorrect treatment), or caused by neurotransmitter atypicalities, or anything of that sort; rather he argues that it is literally caused by a well person deciding to believe that they are ill. Really. That’s it. He attributes the disease to “faulty illness beliefs”. More recently, he has decided to concede that for some people with CFS their faulty illness beliefs are triggered by a transient viral syndrome. However, he still makes utterly absurd statements like “They don’t have CFS in France”, which show that he doesn’t have the first clue what he’s talking about.

This is virulently damaging to people with CFS not just because of the stigma of malingering and all of the issues that go with that (including denial of disability benefits), but also because we get offered “treatments” that don’t work and/or are actively harmful – inappropriate psychotherapy targeted at “challenging faulty illness beliefs”, graded non-paced exercise programmes, and so on.

I’ve experienced this attitude myself, seeing a so-called specialist who threw bullshit at me (seriously tried to tell me to my face that it isn’t real exercise if I’m accompanied by my child; I have to be alone; what?); then at the end of the consultation, when I asked him straight out if he believed in CFS, he weaselled and hummed and shuffled his papers and said, “Well, I believe that people _suffer_ from it….” and trailed off. It probably won’t surprise you to learn that he was being paid by my insurance company.

Wesseley gets a pile of not just medical press but popular press. This is what we’re up against; not just the also-common “CFS is just atypical depression; throw SSRIs and a bit of CBT at them and send them on their way”, but “CFS patients are making it all up; tell ’em to harden up and get the fuck over it”.

I am reminded of the following exchange on a witness stand (misquoting from memory):

Q: Doctor, are you saying that your diagnosis is based on how the patient told you he was feeling?

A: That, Counselor, is the difference between a doctor and a veterinarian.

emmo

June 18, 2009 at 8:53 am

Another person here with an invisible disability. I’m 30 years old and have been in constant pain due to nerve damage (which has been getting worse over time) since I was 18 (apparently caused a “routine” surgery on both ankles). The typical diagnosis I get is RSD (now called RSDS or CRPS), but my only symptom is my pain so that’s more a statement of “Well, she has something wrong with her nerves, and we don’t know what else to call it…”

I’ve been lucky in that my first treatment was at a really good pain clinic in Boston and I’m back there now after living elsewhere for several years. The doctors there see all kinds of pain, and know that what it’s called or whether it matches every item on the diagnostic checklist isn’t as important as treating it and giving people back the parts of their lives that pain has taken away.

Because I’m (relatively) young and I don’t limp (the pain is bilateral, whereas generally you limp if you have one “bad” leg), I often have people yell at me and/or call over security when I park in a disabled space with my placard. I often have people make snide remarks when I take the elevator one floor. I often have people think I’m just going for a joy-ride in the electric carts at the grocery store. All of which is to say that people with invisible disabilities deal with enough skepticism-bordering-on-hostility from people without the likes of Dr. Burton telling people that we’re probably just making it all up.

Nadia

June 18, 2009 at 9:04 am

Thanks for posting this and blasting that Salon article. Fibro is real!!! My aunt suffers from that and she has been repeatedly told by many docs that the pain is all in her head and that she is overreacting and so forth. Its disgusting how long it took her to get properly diagnosed. But even with the diagnosis, she is still looked at as a liar by medical people. How can pain be a disease? they wonder. Well, it is! I have an autoimmune disease that was diagnosed via a biopsy, but had I not felt the pain that I did which lead me to bug doctor after doctor to please help me figure out what was wrong with me, I would not know that I have autoimmune hepatitis. Docs need to listen to their patients and treat their symptoms accurately and correctly, instead of prescribing ibuprofen. FIBRO is REAL!!!!

Thanks for explaining all that, Lauredhel. I read the link and jfc, it actually comes across like a slightly more sophisticated version of the “kids are allergic to peanuts because their mothers are neurotic,” argument. I can only imagine what that guy’s views look like when filtered through the press. I’m sorry you have to deal with that.

While searching for that, I also came across this again – this is not fringe stuff, it’s mainstream medical teaching.

umami

June 18, 2009 at 9:33 am

Also that link in Lauredhel’s comment makes more sense of the badly written Salon article. It refers to fibromyalgia although it is mainly discussing chronic fatigue. I get the impression the author of the Salon article must be familiar with Dr Wesseley’s work; he seems to share the same ideas but he hasn’t expressed them as clearly.

You can add Gulf War Syndrome and PTSD to the list of diseases that turned out to be real.

Even for problems that are solved or improved by thinking better, it isn’t a matter of just being told that you’re making up the problem, it takes careful attention and no insults. Burton isn’t qualified to do CBT, either.

Nia @ 35, if this isn’t too much of a sidetrack, what does it take to convince those parents that their kids should get more food?

Lillet

June 18, 2009 at 9:38 am

“I can tolerate Pfizer’s endless ads for Lipitor, the cholesterol-lowering drug, because the ad is doing a public service. High cholesterol is a serious health problem.”

Yeah, and Lipitor is massively overprescribed and does not provide the benefits that changing one’s diet do. Ads for Lipitor in no way encourage people to learn about how cholesterol can be managed through increasing whole plant-food intake. In my own family, I have seen my aunt tell me (while chain smoking and eating a McDonald’s Happy Meal) that her doctor gave her Lipitor to “prevent strokes.” Smoking and junk food are immensely pleasurable things, and people need to make their own decisions with what they do with their bodies — but I don’t think a doctor handing someone a Lipitor script to “prevent strokes” is what one would call empowering information or a public service. It’s not hnoring the agency of your patient.

I too have friends with fibromyalgia and “invisible” autoimmune diseases, and have seen them struggle with debilitating pain and frustration at doctors dismissing their situations.

There are ways to criticize Big Pharma, and other medical lobbies, without running ramshod over the already-broken bodies of PWD.

This. And, the best place to do this might not be a thread that is supposed to be about PWD and their experiences.

Dymphna

June 18, 2009 at 10:40 am

There are many illnesses that manifest themselves in somatic symptoms and respond to some combination of medication, supplements, and “behavioral” therapies (which is a term that makes sense from within the profession but sounds condescending if you don’t know its history). That doesn’t mean they were made up any more than pain that responds to physical rehab is made up. In both contexts you are engaging in a form of body modification. We just don’t see neural pathways forming the way you can see a muscle developing.

And while it is absolutely true that you can’t “think your way out” of an illness, there is evidence that mental states play an important role in the course of even the most clearly somatic diseases. My current practicum rotation is at a Cancer Center (I’m a therapist/psychology doctoral student). A lot of what we do with our clients is aimed at helping them improve immune system functioning through a combination of diet, exercise, and proper management of anxiety and depression. There is solid research to back this up. I’m not an expert in the area, but the studies I’ve read are pretty persuasive. Happy to go look them up again if there’s any desire for that.

One of the problems created by the “she’s making it up” crowd is the idea that conditions are either/or. This makes seeking psychological treatment as a supplement to other medical interventions seem like you are betraying yourself – somehow proving the naysayers right, when actually its a resource that can help and doesn’t have to define the illness.

It’s a shame, because I have worked with a couple of people who have fibro, and we were able to help reduce the pain; it just wasn’t’ by any magic woo-woo psychological wand-waving bullsh*t. It was because we were able to systematically identify the activities that triggered the worst pain and develop alternatives. We also worked on self-acceptance, because so long as they were worried that the fibro might be “in their heads” (i.e. made up), they had a hard time being able to learn to manage it well. In other words, I’d say that trivializing someone’s illness can actually make it worse. It’s the opposite of “first do no harm.”

I am appalled. There’s really not much to add to this thoughtful analysis, except that I am in total agreement. If the American Medical Association, American College of Rheumatology, Arthritis Foundation, National Fibromyalgia Association, American Chronic Pain Association, American Pain Foundation, Partnership Against Chronic Disease and countless other well-regarded organizations can recognize the reality of fibromyalgia, then how can this guy still question its reality? What a tool. Seriously – I am disgusted that we’re still having this conversation. On behalf of myself (a woman with fibromyalgia) and the thousands of other women (and men!) who live with it, thanks for pushing back.

Dymphna, have you considered that chronic pain patients know that mood affects physical pain (and other physical symptoms)? That they have already heard this from a billion and one sources? A billion of which were using this “fact” to dismiss their physical pain altogether? Have you considered that these people are already doing what they can to address any mental issues, but are struggling to make sure their doctors realize that it is separate from their pain and that BOTH need to be treated without ascribing one to the other, but people helpfully reminding everybody that mood can affect pain! might be a bit counterproductive in that struggle?

I’m not trying to be a jerk — I know you mean well — but we get these “helpful” reminders of so many things (like, above, “but Big Pharma IS evil!”) and it just feels like the reminder-making-people are missing our entire point when they say these things.

“I can tolerate Pfizer’s endless ads for Lipitor, the cholesterol-lowering drug, because the ad is doing a public service. High cholesterol is a serious health problem.”

Yeah, and Lipitor is massively overprescribed and does not provide the benefits that changing one’s diet do.

let’s parse this out a bit. i get really discouraged when i see overprescription raised as an argument against the drug overall. anything can be overprescribed, but that doesn’t necessarily mean that a) the condition for which it’s prescribed doesn’t exist in people or b) that the drug is not effective at treating that condition when prescribed correctly. certainly, not everyone is an informed consumer of pharmaceuticals. but dismissing an entire drug because it is sometimes inappropriately prescribed is not honoring the self-determination and agency of those who are informed consumers and choose to take it.

i’m especially sensitive to this because of the near-universal argument that anti-depressants are overprescribed. sure, there are probably people on prozac and the like who do not have clinical depression and may not be benefiting from the drug other than by padding the pockets of the doctor and drug manufacturer. this is true despite the fact that anti-depressants have no street value because they do not affect people who don’t have the conditions they treat. but to emphasize the overprescription argument erases the very real experiences of people who rely on those drugs to survive.

any tool can be used ineffectively or incorrectly. that doesn’t say anything about the tool itself – just the person using it.

murfnik

June 18, 2009 at 1:35 pm

Not real, imagined, women’s hysterics…haven’t we heard all this before? Cramps, not real…oh crap, I guess they are! PMS, not real…well I’ll be damned! It’ll all be real when asshats like Burton can either FEEL the pain, the memory loss, the bowel fluctuations, the headaches, the nausea, the numbness, etc. or when they can make big bucks by making medicine for it. My own doctor, whom I used to really like, told my mother he doesn’t “believe” in fibromyalgia. Is that like not “believing” in dinosaurs, or evolution? I’m looking into alternative medicine for my developing FM…while I can still move.

maggie

June 18, 2009 at 1:38 pm

This article really, really pisses me off. My Mom has Fibro (which was finally diagnosed after years of doctors insisting that it was carpal tunnel, rheumatoid arthritis, all in her head etc.), so anyone saying the constant pain she is in is “imaginary” is frankly full of shit to me.

Dymphna

June 18, 2009 at 1:52 pm

Amandaw, clearly you found my post annoying. My apologies. I was not attempting to give a “helpful reminder.” My clients knew full well about their mental health needs, which is why they came in for counseling.

But the work we did was not about mental health in the sense of anxiety or depression – it was about building awareness (specifically about the physical reality of pain) and practicing pain management. Not surprisingly, the less pain they felt and the less shame they experienced over their diagnosis, the less symptoms of depression and anxiety they had. In other words, the feedback they had gotten from doctors — that it was “all in their heads” — actually worsened their symptoms, both physical and mental.

I was trying to discuss the how I perceive this discourse essentializing the fictional divide between mental and physical illnesses in a way that I think is harmful. That is something I know a lot about from experience and training. However, I am not currently someone who experiences chronic pain, and I was not trying to address people with chronic pain and presume to teach them about their own experiences. I was more focused on other people working in healthcare who haven’t thought through the way they discuss these illnesses and inadvertently do harm to their patients.

Pockysmama

June 18, 2009 at 2:07 pm

“…the urge to take a tire iron to the denier, yelling as I work them over, “IT’S OKAY! IT’S NOT REAL!”

I love my inner visual of this and you made me LOL at work during a sucky day. Thank you.

My mum had fibromyalgia. Thanks for this post, and, er, screw Salon and all the ‘it’s not real!’ morons.

Shannon

June 18, 2009 at 9:44 pm

Many years ago the medical community said Multiple Sclerosis was all in a person’s imagination. Eventually medical science figured out that the covering of nerves was missing in areas and this is why people are ill with MS. I can certainly understand that medical science may not have figured out what causes people to have certain medical problems however it does not mean these problems do not exist.
For all the years I have suffered with Fibro and CFS I have said I wouldn ‘t wish it on my worst enemy but when ignorant people start judging my condition I am starting to change my mind. I know that is a horrible thing to say but it’s how I feel somedays.

Shannon

June 18, 2009 at 10:03 pm

BadKitty. I am so glad to read of your improvement with Vitamin D. After much research on my own, my levels were tested in March. My score was a NINE !!! I am now working on getting my level up and hoping and praying with ever ounce of my being that this will help me feel better after 20+ years of hell. It’s the first test I have ever had that did nto come back normal ! I am glad you are feeling better !

Shannon

June 18, 2009 at 10:11 pm

BadKitty – Oh I forgot this part. Pleaes check out grassrootshealth.org
Much info on Vitamin D AND one of the major people involved in this site started her research after she had breast cancer ! Her name is Carole.

William

June 18, 2009 at 11:49 pm

I know this isn’t exactly the next battle in the war over who gets to control clinical psychology, but really….

and “behavioral” therapies (which is a term that makes sense from within the profession but sounds condescending if you don’t know its history).

I find the term pretty condescending even knowing it’s history. Ever read “Beyond Freedom and Dignity?”

it just wasn’t’ by any magic woo-woo psychological wand-waving bullsh*t.

Way to disregard entire fields of clinical work as bullshit because, well…they’re too subjective. Isn’t that pretty much exactly what the Salon article did? If you can’t see it on a test it must be bullshit, right? Which you disagree with, except, well, when you don’t.

Amandaw, clearly you found my post annoying. My apologies. I was not attempting to give a “helpful reminder.” My clients knew full well about their mental health needs, which is why they came in for counseling.

Why don’t you step back and try to figure out why Amandaw took offense, rather than back-peddling and defending yourself. Perhaps the reason Amandaw interpreted your post as attempting to give “helpful reminders” is because it dripped with condescension and the assumption of expert knowledge.

But the work we did was not about mental health in the sense of anxiety or depression – it was about building awareness (specifically about the physical reality of pain) and practicing pain management.

Could that maybe have something to do with the fact that you defined what you would be doing? That you took the role of expert, bringing your studies and your homework and your careful analysis of their “errors.” You crafted the care to the context and worked with what you had decided to work with, getting the training and experience you needed for your practicum experience.

I’m a bit surprised that when Amandaw mentioned a pretty common objection (that people who deal with chronic pain understand how mood affects that pain) you decided to go into an explanation of how you taught clients to understand this thing they already understand rather than consider why she had a problem with your post. I mean, she must have misunderstood, right?

and I was not trying to address people with chronic pain and presume to teach them about their own experiences.

No? Thats how it read to me.

. I was more focused on other people working in healthcare who haven’t thought through the way they discuss these illnesses and inadvertently do harm to their patients.

Not a bad plan, although you should be careful that one can err in the other direction as well. “You don’t understand your pain” or “you have been harmed by the messages you’ve received” can be just as damaging as “you’re imagining this illness” because all three statements, ultimately, imply that the problem is within the client, that the client is in a position of ignorance and the clinician/doctor is in a position of knowledge.

Daniel

June 19, 2009 at 4:18 am

Thanks.

I suffer from this. I can no longer work. I have lost my family and soon my home. I am so tired and in pain that responding to this kind of bigotry is no longer feasible. I have to ignore it or it will eat away at my sanity. For every article like Salon’s article, there are hundreds of bigots in the world who think the same way. This person may think he is doing something good. But the harm he inflicts by reinforcing bigotry is profoundly damaging to those of us who suffer.

MsM

June 19, 2009 at 8:04 am

Dymphna, I think you make an important point. A friend of mine has been diagnosed with fibromyalgia, but it has taken years for doctors to figure out what she had. In the meantime, many of them told her it was all “between her ears”, which she took badly, because there was this unspoken implication that if only she would think right, if only her psyche would work as it should, she wouldn’t be in pain. To her, they essentially told her that she was responsible for her own pain and thus, her own cure. And it killed her, because whatever she did, the pain wouldn’t go away and she ended up blaming herself.

Only years later she found out that additionally, she had endometriosis, which might or might not be responsible for some of her ailments. She found that there is evidence of a correlation between endo and fibromyalgia & chronic fatigue. And only then, she was able to somewhat let go of the guilt she had felt all those years.

She has also convinced me of the need for the medical profession not to look at this from a “women’s psyche’s” perspective (which almost inevitably leads to thinly veiled accusations of hysteria), but from a typically women’s physical perspective. There’s a tendency, as in this article, to view a disease or syndrome that typically affects women as the result of women being more frail (in whatever sense, but often mentally – and some of that is definitely misogynistic). Instead of our bodies being inheritently different from men’s.

I always feel there is too much we don’t know about hormones and their interaction with the body, specifically the nervous system.

Dymphna

June 19, 2009 at 12:56 pm

William, there’s a lot I could say back to you, because I think you are extrapolating a whole lot from my posts that is not in there. However, when I see two very opposite interpretations of what I wrote in two successive responses (you and MsM), that tells me that my writing was really lacking in clarity, so I can’t really blame you for that and don’t really feel the need to correct your impressions of me personally.

I do want to refer you upthread to where I talk about my own experiences with chronic pain. I’ve had my own experiences with condescending doctors and with my suffering being dismissed as unimportant or unreal. I would hate to do that to someone else, and I try very hard not to ever even seem like I am. I’m sad that I seem to have done that here. I’m pretty sure I didn’t do that with the clients I’m talking about, but you never know for sure, maybe I did. All I can do is keep trying.

But most importantly, I can see how my tone came across as condescending, and I apologize for that. Sometimes a combination of muddled writing and anger gets the best of me.

It’s not so much about how you meant it to sound — it’s just that it’s something people with chronic pain and disabilities hear *every single time* and it doesn’t matter how good/bad the tone was, it’s still counterproductive to our efforts to see our conditions legitimized.

Like I said, it’s not that you mean bad — I liked the rest of your comment! — and nobody has to “extrapolate out” what you meant, ‘cuz what you meant isn’t really relevant to the criticism. Now, if we were talking about whether you’re a good person, good commenter, contribute to hte conversation etc. (all which seem to be true!) then it would be relevant — but that’s not what the criticism was about. Does that make sense?

Sometimes things get complicated: providing information isn’t necessarily informative, and when there is widespread misunderstanding of that information, the use of it can actually be harmful. As it is, people with fibromyalgia struggle to have their doctors and community recognize their pain. They know that the actual mechanisms of feeling pain and feeling depression/anxiety/other negative moods are very closely interrelated and can’t be completely separated out; mood affects pain and pain affects mood and we can never escape that. But given the current context, where that fact is used to dismiss our pain altogether, pointing it out can actually have the opposite intended effect. It makes the patient feel guilty again (“am I really just imagining the pain?”) and reinforces the opinions of those (including a major portion of the medical industry, who have HUGE power over our lives) who do see our pain as psychosomatic and therefore irrelevant and not worthy of consideration.

So, again, you *as a person*: not being criticized! Just something you said. And not all of what you said (you made some very relevant points). Just that one bit is all.

Dymphna: Don’t worry about it. Looking back at my post I came out of the box waaaay too aggressive. Its a touchy subject for me and you hit a raw nerve of mine (CBT people taking pot shots at analysts/humanists) without malice. So I apologize for jumping on you, I was out of line.

There were a lot of good ideas in your posts and you do seem to have a good understanding of whats going on when it comes to patients being told their pain is in their head (and what doctors really mean when they say that). I’d just say that its probably a good idea to take a step back and consider the implications of your theoretical orientation and how you see your role as a clinician. Condescension and an disregard for patient agency can come in many forms, and those of us who provide clinical services to patients that present with complex complaints have a lot more power than we realize. Well intentioned people with strong clinical skills can fuck up easily, god knows I have, and a lot of the time those mistakes come from forgetting that our expertise and training can only go so far. Thats doubly true when we’ve experienced some of the same problems we believe our patients to be experiencing.

kristinc

June 19, 2009 at 4:45 pm

Beside the points everyone else already brought up, this William Burton moron needs to have the words CORRELATION DOES NOT IMPLY CAUSATION tattooed backwards on his forehead so he sees them every time he looks in the mirror.

What’s that? Patients with fibromyalgia overwhelmingly report symptoms of depression? Could that be because, oh, I don’t know, living with pain tends to make people depressed?

1. I call jumping out the gate with “fuck you” without having a damn good reason to be out of line. I don’t know what your reason is, and you didn’t bother explaining it.

2. We recently had a thread in which a whole lot of people talked about how CBT has worked for them personally. So . . . you kind of just called those people brainwashed. Or “like brainwashed.” I pretty much call that dismissing the experiences of people with disabilities. If you have a disability yourself (I have no idea), and feel that you are qualified to comment on CBT as a part of your own experiences . . . well you are qualified to comment on it as a part of your own experiences. But you’re not qualified to make sweeping statements that are effectively an insult and belittling of other people’s treatment plans.

You know what’s not allowed here? SOCK-PUPPETING is not allowed here. Indeed, it will get your comments deleted. And put you about *this fucking close* to getting banned. It says as much in the comment policy.

If you and Lynn are two different people, then I do apologize. The reason I thought there was sock-puppeting going on is exactly because I checked the comment history. And I saw several identities (more than two, by the way) using the same IP, and I saw two of those identities sometimes using the same URL despite the fact that only one author is listed on the blog. And then comments agreeing with each other, and aggressively coming after me, coming one after the other using that same IP.

I have no personal beef with you whatsoever. I don’t know why you seem to be under the impression that I do. And I’m sorry that you think I do. Because I really honestly do not. I’m just trying to moderate a comment thread. A job that isn’t exactly tons of fun to begin with.

lynn

June 19, 2009 at 11:48 pm

my original comment that got deleted was explaining what was wrong with what AbbyJean implied about people who don’t “benefit” from prozac that they’re not really depressed. RD has been coerced into taking all kinds of anti-depressants that never did shit for her except at most help her sleep at night. And she’s heard the “you must not really have depression” bullshit before.

I don’t really feel like linking my LJ here to prove shit to you but I think your apology is more like a string of excuses to defend what you did.

I did not get that implication from Abbyjean’s comment at all. Which is where the confusion came into play. I still don’t think that’s even remotely what she meant. But I’m not her, so I can’t speak for what she actually meant. And I’m not RD, so it’s not my role or right to say that her understanding of Abby’s comment was invalid or unfounded. I can’t add more to it than that.

You don’t have to prove a single thing to me. There’s nothing to prove.

Lastly, I said that I was sorry. I had reasonable grounds on which I based my conclusion, but the conclusion was still false. And so I am sorry for reaching a false conclusion and for any stress it may have caused.

i apologize. it wasn’t my intention to imply that there are people with depression who aren’t helped by a certain anti-depressants, or even anti-depressants as a whole. i see how my words implied that and sincerely apologize that it read like it was dismissing the experiences or real illnesses of those who haven’t responded to medication(s).

my main point, which i’ll try to express more clearly, is that the fact that a medication can be overprescribed has nothing to do with whether or not it is a valuable treatment. i feel that criticizing anti-depressants (or lipitor, or lyrica, or any other medication) because it is overprescribed minimizes the very real benefits that medication has when it is – whatever the opposite of overprescribed is.

i hope that’s clearer and sincerly apologize for any implication that minimized or dismissed the experiences of RD and anyone else. thanks for raising it.

I just reread my last comment and realized that it might come across as kind of snotty. I didn’t intend it that way, but it’s 1 in the morning so I’m not at my most coherent. And should probably stop leaving comments now. But rereading it it looks like I’m saying “I said I was sorry so shut up,” which isn’t what I meant. I was trying to repeat and emphasis said apology, and it seems to have likely come out pretty wrong. So, I’m sorry for that too.

Or if you know anyone in SWOP-NYC or Queers for Economic Justice you can ask them if we are real.

lynn

June 20, 2009 at 12:24 am

“I did not get that implication from Abbyjean’s comment at all. Which is where the confusion came into play. I still don’t think that’s even remotely what she meant.” yeah because you weren’t force institutionalized and coerced into drugs that didn’t work and then told you weren’te really severly depressed/ have complex ptsd because it couldn’t just be that the drugs just didn’t work.

(And just for what the info is worth, I am now retiring for the evening.)

William

June 20, 2009 at 12:45 am

If you have a disability yourself (I have no idea), and feel that you are qualified to comment on CBT as a part of your own experiences . . . well you are qualified to comment on it as a part of your own experiences. But you’re not qualified to make sweeping statements that are effectively an insult and belittling of other people’s treatment plans.

Just poking my head in here as a professional (and full disclosure, I fall on the other end of the theoretical spectrum from CBT/DBT so I’ll own my bias up front). While I can’t be sure what exactly RD was getting at when s/he made the comment about brainwashing, there are some pretty serious concerns about CBT practice that are in that vein. CBT can do a lot of damage and serve as a means of silencing clients (more so than other orientations) when in the hands of poor or inexperienced clinicians. Theres the compounding problem that CBT is pretty much all thats available to many people who have limited means and is often treated as something of an all-purpose method of getting disenfranchised types to sit down, shut up, and focus on how they have created their own “errors” which lead to their own suffering. Thats not how CBT has to be, but that is the experience that a lot of people (both clients and clinicians) have encountered.

I know that there are people who have had enriching experiences with CBT, that CBT is especially good at dealing with certain kinds of behavior, and that there are some very good CBT clinicians out there, but in a discussion about people disbelieving the lived experiences of people with complex and hard to define problems calling out CBT isn’t unfair or out of line. Thats especially true when the reason that patients are being told something is “all in their head” is because it cannot be proven with a blood test or an x-ray. Many physicians would (and do) see a problem like that and send the client out for a bit of CBT work to “correct” the “errors” that are leading to these symptoms. Its the use of a narrow and aggressively objective view of science to silence patients.

These are the kinds of discussions that a big deal in the clinical community right now and words like “brainwashing” are certainly on the table even when the participants are mature, intelligent, experts. The APA is facing a potential schism over essentially this issue, the professional schools are becoming increasingly hostile towards one another over it, and I can say from first hand experience that discussions about CBT and ethics are among the most volatile one is likely to encounter. CBT might work well for some people, but its a cultural construct that comes with it’s own baggage and is a political issue in itself.

I only didn’t say SWANK cuz some of the members only know me. But also most of the lawyers at the Sex Workers Project, who you can email but they might be annoyed. But there are any number of other people you could conty with easily verified organizational contact info too, email me if you want to contact them.

“I did not get that implication from Abbyjean’s comment at all. Which is where the confusion came into play. I still don’t think that’s even remotely what she meant.” yeah because you weren’t force institutionalized and coerced into drugs that didn’t work and then told you weren’te really severly depressed/ have complex ptsd because it couldn’t just be that the drugs just didn’t work.

That doesn’t mean that’s what she said, what she meant, or what it’s logically possible for her to have meant. “People who are not depressed do not respond to antidepressants” does not mean “People who do not respond to antidepressants aren’t depressed”, any more than “Pregnant people are women” means “Women are all pregnant”. Jumping on someone for a perfectly reasonable statement and saying “fuck you” for something they didn’t mean and couldn’t reasonably have meant, because something horrible that happened to you caused you to misconstrue their words, deserves an apology, not a “Fuck you even more, how dare you act like you have the right to say something without running it past people who will feel hurt by their misunderstanding of it!”

The behavior is so irrational I can see why Cara assumed you were sock puppeting. That doesn’t mean you are, but it does mean that maybe you ought to step back, take a deep breath, and recognize that if you misunderstood something because of your own suffering, maybe it doesn’t mean they should have been more sensitive and you were justified in jumping their shit; if everyone else thought they were being perfectly clear, maybe the problem is that you just misunderstood. And if someone guessed you were a sock puppet because you were coming in to defend someone who said “fuck you”: to another poster for what seemed to be absolutely no discernable reason, maybe screaming how offended you are that you were mistaken for a sock puppet, instead of apologizing to the person who didn’t remotely say what you thought they were saying for your rudeness and viciousness to them over what you misunderstood them to be saying (or getting your friend who actually said it to apologize instead of them continuing to act like the two of you are perfectly justified in your rudeness), possibly just makes you look even nastier and less worth having dialogue with than if you *were* a sock puppet.

What happened to you is fucking awful and in general I would like to beat any doctors who dare say “You don’t respond to the drugs, therefore you’re not sick”, with a baseball bat. But “People who are not sick don’t respond to the drugs” does NOT mean the same thing as “People who don’t respond to the drugs are not sick”. Not even close. She couldn’t have been clearer about it. You made a mistake, own it. Cara already owned hers and apologized for calling you a sock. Your pain does not justify you lashing out at innocent people for your misunderstanding.